Melissa’s Fighting Fund

 

Melissa’s Update

Firstly, please let me apologise for the delayed update to my website. I have wanted to do it for so long now, but I didn’t realise what a perfectionist I can be. Writing a few lines like everyone kept telling me to do just wasn’t good enough. I needed to give it all my time and effort if it was going to be worth reading. I’ll let you be the judge of that.


Okay, so here goes. This time, I am in Boston and I am taking it easy for the first time in a while. But before I talk about that, let’s go back to where I left off...


Having seen my oncologist at the end of November 2008, he decided that I needed to have an MRI scan on my spine as a Grade 3 Anaplastic Ependymoma Tumour is very likely to spread once it has come back. Of course, I hoped (as I always do) that it would be okay and show that my tumour had not spread, but deep down I knew it had. I had been having back ache for a few months, but had been putting it down to feeling tired from school and not being able to shake off a cold that had been lingering. The day I went for my results of the spinal scan I felt awful. I hadn’t slept the night before due to my sore back and I felt like I had a bad case of the flu. It’s difficult when I feel like this because 9 times out of 10 I do just have a cold or flu symptoms like everyone else, but there is always an underlying worry of how sick I felt back in 2005. I kept thinking the worst. What if it is coming back? But like I’ve said many times before, you can’t think like that otherwise I’d be at the hospital all the time!


On this occasion it was a bit of both. I knew I had the flu and my tumour had spread to my lower spine. Being told what I already knew in my heart was not as easy as you might think. Unlike any other time I have been given bad news, this time I just sobbed. Like you do when you’re little and you find it hard to catch your breath. I couldn’t stop crying and my fears were realised again. It wasn’t that I felt sorry for myself, I just kept thinking ‘Please don’t let this ‘thing’ start to take over me’. ‘Please don’t let it get out of control’. I needed to be in control and for a little while, in that doctor’s room, I lost it. And so did James and my family. We were all devastated.


My oncologist, Dr Glaser is a very straight talking man (must be something about me and all of these no nonsense doctors!). He is very kind and I know he will always do his up most to make me better. He kept saying to me ‘Do you know how serious this is?’ and we kept answering ‘Of course we do’. That conversation will stay in my mind forever. Dr Glaser talked to us about conventional radiotherapy and said that if we went for this option it was going to be tough. You always know when a doctor says that things are going to be hard, they really are. But for me, none of that mattered as long as they say they can make me better. Anything is worth that. No pain, no gain!


Dr Glaser said that if I followed the conventional radiotherapy route in the UK, they wanted to start treatment as soon as possible and that I would need to stay in hospital. Dr Glaser explained that conventional radiotherapy would shoot my bone marrow to pieces and I would potentially need blood transfusions. At the same meeting, my family and I also talked to Dr Glaser about the option of proton therapy and all the different hospitals around the world that offered it. Dr Glaser explained that our first step was for him to contact the doctors in Boston, as they are experts in brain and spine treatment. I was told that my case was so complicated that any other hospital would not have the experience or expertise to cope with my treatment and that they would turn me down for this reason alone. Turn me down? What did that mean? As a family, this was something we had never even considered. Surely that wasn’t even an option. We had thought that as long as we could raise the funds, I would be able to have proton therapy wherever we chose. This was my first lesson. Money doesn’t always talk!


Unfortunately, the decision to give me proton therapy treatment and help save my life was not left up to us to decide. The opportunity of survival was out of my control. Whether or not I would be accepted for treatment at Boston would be decided by the medical profession. The wind was knocked out of my sail and we all prayed for a positive response. What if Boston wouldn’t accept me? What would we do? Well, that didn’t even seem worth thinking about! The one good thing I had on my side was that Dr Glaser had said that Boston may find my case ‘interesting’ and that this may sway the doctors to accept me for treatment. I really would have liked to have heard that they could cure me, but if ‘interesting’ was all I had, then ‘interesting’ was what I was happy to be. We left Charing Cross hospital in a daze that day, all quietly praying that our luck was about to change for the better – and there was no celebratory drink in the local pub this time.


It was now that we decided to set up a website to raise awareness about my story and to tell people about proton therapy. I felt that this was an important thing for me to do. I also wanted to use the website as a tool to help us find the money to pay for my treatment. It wasn’t going to be cheap and we needed to get to work straight away. We sat down as a family and had an ‘official’ Huggins board meeting. We discussed how much money we all had to put in, how much more we had to make and more importantly, how we were going to reach our target. I suppose you could say that we had a very lucky start. James, my parents and Katrina and her fiancé, Dan had already started saving for our forthcoming weddings and decided that this money would now go into the fund. We had a firm starting point and a momentum to build on. We decided early on that there was no way we could ask family, friends, neighbours, work colleagues, the local community and the British public for donations if we were not willing to sacrifice our own cash. And so ‘Melissa’s Fighting Fund’ was born! This website has been worth its weight in gold. We have had an unbelievable response to it and I would like to say a big thank you to everyone that has worked so hard to put it together. I would also like to say a big thank you to everyone that has logged on and donated some money. Thank you so very much.


I took the next 2 days off work, mainly to recover from this flu that I couldn’t shake off, but also to get my head round my latest diagnosis. I am so pleased I did, as this is when the media attention really picked up. I needed all the energy I could muster if I was going to go public with my story. I had to be ready, have my wits about me and fight. This attention wasn’t going to last for long and I needed to grab it with both hands and enjoy my 5 minutes of fame. I needed to make the most of the opportunity I had been given. I had to get my story across and raise awareness of my plight. I felt it was important to explain why I was doing all of this and how we do not have specialised proton therapy machines in the UK. I was lucky enough to know about the options available for treatment abroad, but others may not. I wanted to give other people battling cancer the chance to look into proton therapy too. Now that the tumour had spread to my spine, we needed the money for this treatment more than ever and I needed all the help I could get to raise the funds.


I got my first taste of stardom on Sunday 7 December 2008 when I received a call from GMTV (it still makes my heart race now if I think about it too much!) They wanted me to go into the studio on Tuesday 9 December 2008 to talk to them. Half of me wanted to say ‘No!’. The thought of speaking live on TV was not even funny, but the words of Dr Glaser rang loud in my head from our previous meeting. These were the words he said. ‘I’ll make a deal with you. If I get you into Boston, you will try and fight for a proton machine’. I had no idea how I was going to help do that, but speaking to millions of people on a popular morning breakfast show seemed a good place to start.


James and I were picked up at 5.30am on that Tuesday. I had planned to be ready so I could try and calm myself down and talk myself through the interview in the car, but in true Melissa style, I was nowhere near ready when we were collected. Whoops. I had to make myself look presentable in the car as we sped into London to the studios. The interview questions went out of the window and I told myself that I was going to have to wing it (and I am no good at doing that!). We arrived at the studio and sat in the ‘green room’. James helped himself to pastries and tea and I sat there glued to the TV screen thinking ‘Oh my goodness, that’s going to be me soon. Help!’ I have not felt that nervous in a long time. I can safely say that Ofsted and even brain surgery are hard pushed to beat a live TV interview. I was just so worried that my mind would go blank and I would start to waffle. Looking back, I don’t know what on earth I was worrying about. Poor James couldn’t get a word in and neither could Fiona Phillips. Sorry!  The trouble is, I knew I only had a few minutes to get my point across and I needed to make the most of it. I was feeling quite emotional that morning and could have cried at any time. Mainly because I knew why I was there and that I needed help. However, I had decided that I would not let myself cry. That would be wasted airtime and I did not want people feeling sorry for me. That is the last thing I ever want. I am a bit of a martyr like that and if people feel sorry for me then it means I’m sick. Silly really because I am! But I so desperately want to be well again and normal that I decided tears on the GMTV sofa was not a good look.


The actual interview went really well. Fiona Phillips was lovely and made me feel completely at ease, so it’s her I have to thank. If I had felt awkward, I would most definitely have forgotten what to say. With this live interview under my belt, I knew I could cope with any others. On the way home, our ‘phones didn’t stop ringing. Proud family and other media interest. From here, we were able to do a London Tonight and Channel 5 TV interview, Daily Mail newspaper article, and lots of other local newspapers. Oh and I hope you picked up the Real People magazine and Cosmopolitan magazine this month too! I can honestly say that the support, well wishes and donations from these TV and newspaper/magazine interviews has been amazing. I want to take this opportunity to thank every single person who has thought of me and helped my fighting fund. Without you, we would not have raised the money I needed and I would not be receiving proton therapy now. I will never be able to thank you all personally. I will never be able to thank you all enough, but please rest assured, I am eternally grateful for the generous and kind hearts of you all.


I would also like to say a very special thank you to a little girl called Ruby Lyde. Ruby is a year 6 pupil from the school that I teach at. I did not know she had contacted GMTV for me until the night before I went to the studio. Nor did I know that Ruby was going to be on a video clip before I spoke. That was tough. Like I said, I was feeling very emotional that morning and to see Ruby made me feel like a very special teacher. You’ll be pleased to know that I retained my tears for the camera as I have learnt to detach myself from emotional situations. As horrible as it sounds, it is a must for me. I cannot keep crying. If I do, I will never stop and that is not how I want to fight. I have to stay strong, focused and determined to win.


Ruby - without you writing that email, I don’t know where I’d be today. You have helped me get to Boston for treatment so quickly. And more importantly, you have helped me raise awareness about proton therapy through the media. Something I never dreamt would happen. What a lovely person you are and my little star of course! Thank you sweetness.


In the background of all of this, my family and friends had also begun working tirelessly to raise the funds needed to get me to Boston. I had still not been accepted at this point, but if the call came, we needed to be ready with as much money as possible. I had decided that if I was to be turned down from Boston, then any money raised would have gone towards helping someone else who had been lucky enough to be accepted or maybe a charity that helps fund patients to receive treatment abroad. Either way, it would go towards a good cause and help someone like me.


I would also like to take this moment to say a big thank you to everyone for their support and encouragement during this difficult time. It is important for me to acknowledge the efforts that everyone has made with the fundraising activities they have planned and implemented over the last 3 months. There are too many events to mention one by one, but everyone has done an amazing job and raised lots of money. The first event to kick start our fundraising was a night at a bar called Abaya followed by numerous others. And they are still continuing today! Brilliant. That said, the one fundraising event that stands out in my mind is the Auction Dinner at Hazlewood Golf Club on 13 December 2008. People were fantastic with the items that they donated and we had some spectacular prizes to auction off. Holiday’s abroad, premier football games, sporting memorabilia, film premiers, concerts, day trips out and much more. To be honest, I’d have liked them all for myself, but that would have defeated the objective! As you can imagine, an event like this was a massive task and one that was new to us all. Team Melissa quickly got into action and began preparing and arranging a wonderful charity night. We knew this could be our one and only chance of making a big amount of money, so it had to be organised with precision. It was at this point that we began to realise that fundraising for a serious amount of money was like a full time job. It was tiring, hard work and time consuming, but if we could pull it all off, it was going to be one of the most worthwhile things any of us had ever done. And definitely a good thing to add to our CVs!


We found a venue and James got a ‘Master of Ceremony’ outfit. He wanted to stand out from the crowd (as only James knows how to) and add a bit of fun to the night. As a family, this is something we have all agreed on. We want our fundraising events to be fun and for people to walk away and say ‘I had a really good night and it was worth it’. It has and still is, very important for us to remain positive, strong and upbeat as we manage one of the most challenging episodes in our life. A smile and a laugh can go a long way.


Our auction was a fantastic night. Everybody had pulled together to make it the best it could possibly be. The decorations looked lovely with pink balloons, table decorations, sweets and t-shirts. Everyone was here to support Melissa’s Fighting Fund and it was an overwhelming sight for me to see. James kept the momentum going all night and he was assisted by a very close family friend. It was a comical sight and one of my favourite photos is of me pretending to bash them with my pink boxing gloves. My friends also did a great job and became waitresses for the evening. They made sure that no one needed to leave their seats for anything and that the alcohol flowed to the tables with ease. Well done everybody!


Throughout the night, we kept a tally of what we thought we might have made and I was chuffed to discover that we had reached £7,000 before dinner. I thought that was unbelievable. I hoped we’d make the same after dinner and if we did, then we would have raised more than I first thought. No one could have prepared me for the final figure. When James read out the total at the end of the night, I put my head in my hands in sheer disbelief and then I cried. What a surprise! Wow! £50,000!!!! How could people be so generous? All that money to help little old me get the treatment I so desperately needed. For a while our target seemed so far away. I truly believed we’d get there, but not this quick. With this sum of money in the fund, on top of what we had already made from other events, we were over halfway there. I’m still lost for words today. This was just the beginning and we were doing so well. Amazing.


I wanted this money more than ever now. Two days before the auction dinner, I received the ‘phone call we had all been waiting for. Everything was starting to fall into place and our luck was starting to change. I was confident we could do this!


But before we move onto that, I must mention that most of the fundraising events on the website have been organised by James, Trina and my best friend, Lucy. They are my 3 musketeers. They have all worked so hard behind the scenes and have been the foundation of raising all this money. Without them, Melissa’s Fighting Fund would not be the success it is today and I want to take this opportunity to thank you from the bottom of my heart. I love you all.


Of course, there has been loads of effort from people who have organised their own personal and individual events. Some people don’t know me at all and I would like to say a big thank you to them too. To raise money for a person that you have never met is something special and I have promised that I will be just as generous to other people who need life saving treatment. Help those who help you. My second lesson in life.


Okay, so back to the dreaded ‘phone call. This came on Thursday 11 December 2008 and James called me during my lunch hour at school. He said he had been speaking to Charing Cross and that Dr Glaser had been trying to get hold of us. We knew he had an answer, but did we really want to know what it was? Please, please, please let me go to America was all I quietly said to myself every second of every day. For me, I had hope on my side that Boston would accept me, but there is always that doubt that they might not have agreed to treat me once they had reviewed my case. More than anything in the world, I didn’t want that moment of doubt to come true. James and I agreed that if Boston declined me and would not treat me, then he wouldn’t call me to tell me as there would have been no way I would have been able to concentrate and teach at school that afternoon. Two minutes later he called again. I remember being a little cross thinking ‘If the answer is no and you’re ringing me to tell me, then I am not going to be able to hold it together’. I answered the phone and waited. Typical James! Cool as a cucumber. He didn’t shout the answer down the ‘phone straight away. In fact, I can’t quite remember what he said, but it seemed like an eternity before he told me anything. They said ‘Yes’, he said. I didn’t know how I’d react, but I was very calm and I could literally feel the weight of so many weeks of worry slip from my shoulders. I was absolutely over the moon, but still very frightened to celebrate in case, by some cruel mistake, he had got the answer wrong. Again, it’s sad to say this, but I have learnt not to get my hopes up as they will often come crashing down around me and I get very upset and disappointed that a glimmer of hope has been snatched away from me. This was too important to let it crash. I rang my Mum and Dad. They cried and Trina just told me that she knew they would accept me and how pleased she was. I couldn’t help but keep imagining what it would have been like if that answer from Boston had been No. Now, instead of pleading, my thoughts turned to saying thank you, thank you, thank you every second of every day. I knew only too well how my life could have turned out. It would have been so different right now if that had been the case. Once the news and reality began to set in, our family slogan ‘Boston here we come’ was used through both sad and happy moments to keep us positive and remind us what we were striving so hard to achieve.


With the ‘go ahead’ from Boston, we now had to wait to get there. Part of me just wanted to jump on a plane and start treatment. This was the treatment that was hopefully going to help me survive and I wanted to start fighting this retched disease straight away. On the other hand, I knew that only 1 in 8 people were accepted for treatment in Boston and that made me feel like one of the luckiest people alive. Anything was worth the wait. I would wait for however long it took. I would be patient while the doctors decided my future and my treatment.


Actually, the timing of the wait was perfect for me as I had Christmas to keep me busy. Christmas is my most favourite time of the year. I absolutely love it and I never want it to end. Just call me Peter Pan! I had the best Christmas ever with my family and friends. It was really important for me to spend time with the people that I love the most and with people who, probably over the last few months, had watched from the sidelines as I ploughed myself into the media and work. As for it being a quiet, restful Christmas, I’m not too sure about that. I actually went back to school for a rest in January!  But that’s what it’s all about and I have reminded myself that I had lots of time to rest in Boston.


Christmas came and went very fast. As it does every year. Before I knew it, I was back at school. I think lots of people had expected me to be in America already or to be flying out very soon. Unfortunately, I still hadn’t heard back from the hospital. That was okay though. I understood that Drs needed a holiday too! The only information that we had received was that my Drs in America had decided on an 8-week treatment plan. This was to consist of 2 weeks planning for my treatment, then 4 weeks of whole cranial and spinal radiation and 2 weeks resection of my original tumour. Sounded like a good plan. We now just needed a date and we didn’t have to wait long for this. We received an email advising me that my treatment would start on 18 February 2009 and that I would need to be in Boston by 4 February 2009. Excellent. Boston here we come! And I was strangely excited, but nervous too. I informed my school and I felt happy knowing that I had time to make sure everything in my class was just right before I left the children to a supply teacher. This was not the case. Dr Glaser informed the Drs in Boston that my spine was causing me a few problems and that I needed to see them urgently. I had mentioned to Dr Glaser that my back was aching constantly and that the pains I was experiencing were becoming more frequent. It’s difficult to give the Drs a precise answer when they ask you how it feels. I don’t know how painful a tumour in the spine is meant to be. I don’t want to be dramatic, if what I feel is expected, but at the same time, I know how bad the pain became last time with my brain tumour and I really did not want to go through that again. We quickly received an email from my team in Boston to say that they wanted to see me as soon as possible to assess my spine. If it was okay and they decided that I could wait until the 18 February 2009, then I could return home and wait for proton treatment to begin as planned. But, if they were concerned about my tumours, they would try to bring my treatment forward or look for alternative treatment(s) to hold my symptoms at bay until proton therapy could commence.


So, on 13 January 2009, I flew out to Boston with James and my Mum and Dad. First Class courtesy of British Airways. What a great start! It was fantastic. I could get used to that! This is what we had waited so long for and we deserved to savour every moment as we climbed to 38,000ft and headed off across the pond. I was definitely on a high at the start of my trip. I almost couldn’t wait to get started. I wanted these tumours to know that I meant business and that I’d had enough of them. After all, it has been 3 months since my re-diagnosis and having these ‘masses’ inside me, at times, makes me shiver from head to toe.


The day after we arrived, I visited the hospital for the very first time. Massachusetts General Hospital. The place that would make me better. The place that would save my life. My first day at MGH consisted of numerous scans. I had 1 X-ray of the brain and 4 MRI scans. Nothing new to me, as I have these every year. Just a little longer and more thorough. It was important to have these scans so my new team of Drs could assess my case and choose the right treatment for me. With each scan, there is always a little worry of getting the results. Being told what they have found or reminded of what I have is never a nice experience, but one that is necessary and that is that. I often hope that the Drs will tell me this has all been a horrible mistake and they were wrong, but then that would mean my scans would have to be someone else’s. I can honestly say that however hard this is for me, I would never wish it on anyone and no one deserves this. It goes back to my old saying that everything happens for a reason and I truly believe that. There is a reason why I am poorly and maybe it is so I can fight it and hopefully one day, help other people.


We met with the Dr that would be responsible for my proton therapy treatment on 15 January 2009. You know how I said before that you can never be too sure of a situation, as it can come often come crashing down around you. Well, this was one of those days. Dr Shih told me that my treatment was not going to be easy and once ependymoma tumours come back, they are hard to cure. Statistically, this type of tumour very rarely comes back, but if it does, it is not an easy one to fight. We also found out at the same meeting that there was now a 3rd tumour at the top of my spine and some ‘spotting’ in another place. I thought 2 tumours were bad enough, but this wretched thing just keeps on multiplying! I guess you could say Dr Shih was my bearer of bad news. Not a job that I would want to do! However, not being someone to dwell on the ‘what ifs’, I focussed our discussion back to my treatment plans. I wanted to talk about what we could do rather than what we could not do. It doesn’t matter how hard you try to protect yourself in these type of situations. I was knocked back again. I lost a little of my confidence and fighting spirit in that split second, but I soon picked myself back up. What I did feel confident about though was the fact that Dr Shih was taking my notes to the proton board meeting later that day to discuss my case with other medical professionals such as surgeons, neuro oncologists and other proton Drs.


Before we left the room, I told Dr Shih that whatever treatment they were considering, I wanted it to be as aggressive as possible. I had come here to fight and if that meant being extremely poorly for a while, then so be it. Anything is worth it to make me better. I love my life and I will do whatever it takes to keep it. We went back to the apartment and waited for the ‘phone call from Dr Shih. Dr Shih called back later that evening and said they were looking into the possibility of an operation. Excellent! Of course I didn’t want to have brain and spinal surgery out of choice, but if they could reduce the size of the tumours, then that was a good thing. Right? Surgery was something that the Drs were not prepared to do in England and I was willing to do anything. But as it turned out, it wasn’t that simple. The Drs were not looking to reduce the tumours. They were concerned that the newest tumour they had found at the top of my spine was strangling my spinal cord. If I had proton therapy it would inflame my tumours and potentially squash my spinal cord. They needed to snip the tumour in order to relieve its grip from my spinal cord. Just when you think things can’t get any worse, they do. What is it with me? I started to feel that someone, somewhere was testing my human spirit. There are moments when I feel like I can’t take anymore, but I promise you these do not last for long and I’m back like a bad smell refusing to go away!


Our next appointment was with the neurosurgeon and neuro oncologists to discuss possible surgery. This meeting was much more positive and we talked about chemotherapy at the end of my proton therapy treatment. Again, I made it clear to the Drs that I felt that the best approach would be the most aggressive approach. For the Drs, it was not that straight forward. They explained that there was no statistical proof that chemotherapy had any effect on ependymomas. Typical! They said they would have to investigate this possibility further and that they would speak to a Dr in Texas who had researched ependymomas thoroughly. They explained to me that they didn’t see any point in putting me through chemotherapy if it wasn’t going to work. I understood that, but I wanted to say to them that I might be different, that maybe I am different and my tumours would respond to chemotherapy. But I will cross that bridge when we come to it after my proton therapy treatment has finished. It’s another avenue to think about at a later date. We also discussed pain management and they explained they would be in charge of any tablets that I needed to take during my treatment.


At this meeting, the neuro surgeon took another look at my MRI scans and decided that it wasn’t necessary to operate after all. He explained that the 3rd tumour wasn’t strangling my spinal cord as much as he had first thought and that it wasn’t too urgent to relieve it. This was good news. I decided to ask whilst we were there with the neuro team about the possibility of them operating solely on the basis of reducing each tumour. They said they would be happy to consider this, but would need to meet with the spinal surgeons to discuss the possibility. They stated that there was no point operating on one tumour without operating on any of the others. This is something I found hard to understand, but I think I get it now. In my opinion, surely the less of the tumour there is to zap, the better. I soon learnt that this was not the case. The surgeon explained that when they operate on the brain there is a chance that some cells will come loose and float in my spinal fluid before settling on other parts of my brain and spine. So, unless the Drs are confident that they can reduce the tumours significantly or reach them without damaging me, there is no point in surgery and removing them because I could end up worse off in the long term. The main aim for the Drs is to complete proton therapy as soon as possible before any more tumours appear or spread. We waited for over a week while the surgeons reviewed my case and deliberated whether or not to operate on me. There was obviously a lot to decide and waiting to hear from them was one of the hardest parts of being in Boston. It was like torture not knowing and as much as I wanted that operation, I prayed very hard that whatever decision they made, it was the best one for me in. Finally, Dr Carter called us back. The spinal surgeon was not willing to operate on me. He said that my health was too good and that there was a high chance they would physically damage me due to the positioning of my tumours. The spinal surgeon informed Dr Carter that he had tried to do many of these operations before and that they had not been a success. His words were ‘I will not do surgery on her’. His reasons were taken from experience and I respected that. We were advised that, if I underwent surgery, he would damage the nerves that control my bladder and bowel function. Of course I was utterly disappointed and upset, but at the same time, the decision had been made for me. There was nothing else they could do and I had to accept the Drs decision and their level of medical expertise. No brain surgery, no spinal surgery and potentially no chemotherapy. I felt like I was grasping onto very little hope and it was back to square one again. My family and I began to focus on proton therapy once again. After all, this is what we had come out here for and this was the best form of treatment for me.


So, here we are at the present day. What an update, what a whirlwind, what a few months. On 30 January 2009, I went to plan for my proton treatment. I have to say, the Drs out here have been marvellous and they take caring for their patients to the next level. They really do look after me. This appointment took about 3 hours. I was met by 4 lovely people (technicians, therapists and oncologists) and the whole process was quite labour intensive. Luckily, they were a very relaxed team and on my request, they took photos of me throughout the planning stages. I think they thought I was a ‘Barmy Brit’, but I thought it would give the people reading my website something to look at and understand what I am trying to get across.


Proton planning is very complicated, so let me try and explain what it was like. Firstly they made a mask of my face. They put pads on my chin, nose and forehead so the mask itself wouldn’t sit too close to my skin. Then they laid the mask over my face and it felt like a warm flannel. They moulded it round my face and then began to fan me. Luckily, I had my eyes shut with patches on, so I imagined I was on a beautiful beach in Thailand with a warm flannel on my face and a lovely person cooling me off with a fan. Note to self. Book our next holiday to Phuket! The mask that they made of my face was actually much smaller than I thought it would be and I was a little disappointed. Like a child, I wanted mine to be the biggest and best. After a few minutes, the mask cooled and they clamped it into place on the bed and then fiddled around with some measurements for a while. Don’t ask me what they were doing. I was more concerned that they had asked me to take my hair out and I was looking like a mad woman!


When they were ready, I was told to lie on the bed with my face in the mask. My challenge was to practise for the proton treatment and to lie still the entire time. Not as easy as it may seem. I am such a figit. As soon as someone says to me ‘don’t move’, I get all itchy and twitchy and want to do just that. Not this time. My small role in all of this was to do as the Drs say and to do it well. So I stayed still for as long as I could. The oncologist put 10 ‘beebies’ on me, which were very small ball bearing stickers.


                  

I had 3 on my head and 7 on my spine, all in different positions. The purpose of thee was to ensure that when I went into the CT scanner, the ball bearings would show up and the Drs could position the laser beams accurately, making sure my spine was straight. After approximately 2 hours, I was nearly finished, having been moved in and out of the CT scanner a million times. Each time I had my head or back moved by


                 

millimetres to ensure that my position for treatment was just perfect. The precision is unbelievable. Now it was time to shave my hair in 3 tiny places. The technician shaved my hair above both of my ears and at the back of my head. This was to allow my team to give me some tattoos. For those of you who know me well, they will understand, but for those of you who don’t, I want you to know that I am such a wimp when it comes to injections. Telling me they were going to replace the ball bearing stickers with 10 tiny permanent tattoos made me shudder. I didn’t kn
ow whether to run out of the room or laugh at the fact that I’d always wanted a tattoo, but had never been brave enough to have one done. That’ll teach me. Not only was I getting what I had always secretly wanted, but 10 of them. And to top it all off, they weren’t anything to be proud of. Just little black dots that looked like pen marks. I have to say, they have made me think twice about tattoos. Maybe it’s where mine are positioned, but having 10 injections in the head and the spine was not appealing. Don’t ever do it. Believe me! So, that was it, planning over. I left that room a new woman. A few specs of new body art and a very marked and lined face from wearing my mask.


Now all I have to do is sit back while the Drs busily plan what they have in store for me. My treatment is due to start on 9 February 2009, so by the time you read this, I will have probably had my first couple of sessions. I will keep you posted with how it all goes. Let’s hope I don’t leave it so long next time to update you. But, if I do, please excuse me as my Drs tell me that I will get very tired from all the proton therapy treatment.


So, there you go. The last 3 months of my life. I don’t have any more hospital visits until my treatment begins, so I have a chance to be me again, just for a little while longer. Plain old Melissa, not Melissa in hospital for life saving cancer treatment. I’m looking forward to being me, to being with my family as they visit, updating my website and of course, writing my thank you cards. I have no idea where I will start, but I promise to thank as many people as I can. There are some people that have donated to my fund that haven’t given their contact details. I want them to know that we received their donations and their kind words and although I won’t be able to thank them personally, I want them all to know that their generous gestures meant a lot to me and I am truly grateful for their encouragement. For each and every person that took the time to help me, I will take the time to say thank you back. I promise. That’s the least I can do.


xxx